Nel's Story

"I am Ellen, age 56 at diagnosis, currently approaching 61. In September 2011, I was diagnosed with Stage IIIB IBC. I had chemo, unilateral mastectomy, chemo, radiation and a year of Herceptin, finishing Feb 2013. In June 2013, I had a CT Scan where mets to my adrenal gland were found. After numerous tests and appointments to an endocrinologist, it was determined that my IBC had spread. I resumed treatment in August 2013 and have been NED since October 2013. Although I consider myself very fortunate, I continue in treatment: Herceptin and Tykerb with CT Scans approximately every 6 months. It is so very frustrating to know there is not enough research to determine if or when I could stop treatment. So I continue in treatment, grateful knowing so many others do not do as well, but worried about the side effects of long term treatment. Extending my life and that of others, with the possibility of debilitating side effects, should not be the goal. Cure should be the goal!

"I was separated at the time of my initial diagnosis. I have 2 children, a son soon to be 22 and a daughter soon to be 17. This has been the most difficult part, to look at my children and know I may not be here for graduations, new jobs, boyfriends/girlfriends, grandchildren, good news and life's challenges. Their dad is in the picture, but does not have his 'ear to the ground' in the same way I do. I do not want them adrift without support and guidance as they move into adulthood. No matter our age - we always need our parents.

"The most significant support has been from others traveling the same path. To sit with others who 'get it' and share our greatest fears, laugh and cry has been so important. I have great friends and family, but it has been others with metastatic breast cancer who have been my strength. Family and friends have brought meals, driven, listened and tried to understand. They have been wonderful. But unless you are wearing these shoes, it is almost impossible to be fully present and understanding. Do not be afraid of making those connections, they will be invaluable.

"I am living my life with stage IV cancer; I laugh, work, raise my children, travel, have good days and challenging days. My days look much like those not living with cancer. But stage IV is sitting on my shoulder, voicing an opinion in every decision I make. Stage IV is a weighty companion."